Hello All,
I
posted on our PPN Support Group a few days ago about experiencing symptoms of
severe weakness with pressure on my head, slight headache, dizziness, brain
fog, unable to speak at times and heart arrhythmia. This was accompanied by an
odd blood pressure reading of both high and low blood pressure at the same
time. I usually have very low blood pressure when sitting and then very high
when I am standing, moving around or exerting myself in any way.
One of our members suggested that I might have some kind of dysautonomia or orthostatic intolerance. This is seen when blood pressure drops or heart rate spikes from being up right. It is a dysfunction of the autonomic nervous system.
Though not diagnosed with dysautonomia, I assume I have some form. For several years I have been unable to sit up straight for any length of time. I must be in a recliner and my power wheelchair is designed with a reclining seat for that very reason. I must have it partially reclining when in it, otherwise my blood pressure goes up and oxygen goes down and arrhythmia begins. I can only be on my feet or do anything to exert myself for a short while because of this. I am on oxygen 24/7.
Due to the form of PP I have, I can take no medications because most cause my blood pressure to drop. With fluctuating blood pressure and heart rate and long QT heart arrhythmia, medication is not an option. Getting a definite diagnosis would not help me in any way, just confirm what I already suspect.
I am in this condition because I did not know what I had for 62 years and was misdiagnosed and mistreated and given medications I did not need which obviously caused great damage, unfortunately.
It is our HOPE at The Periodic Paralysis Network, that much of this can be avoided for most of you!
Calvin and I created our website, this Support and Educational Group and wrote our book to share with everyone how to avoid becoming as bad as me.
Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate medical diagnosis and treatment. We continue to do research and provide the latest information to our members.
Due to our work, we have been recognized as a patient advocate organization. We are here to advocate for your rights and medical safety as well as providing the information needed to treat your symptoms.
We are now a member of AdvocateDirectory.org
"This list of links and websites is presented solely as a resource for patient advocates and other individuals who seek information on patient safety and quality."
We are here to help you be the best you can be!!!!!!!
More information about Dysautonomia:
http://www.dysautonomiainternational.org/
http://en.wikipedia.org/wiki/Dysautonomia
Until later...
